"With an orphan disease, the support can be hard to find. I found that support at the MPN research foundation." - Juan Alderete, PV '06. On Hydroxurea/baby-aspirin and living a quality life! Photo credit: Marianne Williams

JoAnn Mason: A Parent's Perspective

My name is JoAnn Mason and I am the parent of an MPN patient. Our daughter Jaclyn was diagnosed with polycythemia vera at age 17. Hematological malignancy? Blood cancer? Incurable? What would that mean for her future?

At the time my husband John and I had never heard of myeloproliferative neoplasms. As parents, we were confused, frightened and eager for answers. We didn't know where to turn for help. We then found the MPN Research Foundation and discovered we were not alone. Starting with our friends in Washington, D.C. we began a letter writing campaign to raise funds for MPN research and patient advocacy.

Our family established the Mason Fund in 2009 to raise funds for critical research into polycythemia vera (PV), one of three rare blood cancers which form a group designated as ‘myeloproliferative neoplasms’, or MPNs. The MPN Research Foundation administers the Jaclyn Mason Fund and through them, in 2011, we were able to fund our first research project targeting polycythemia vera.

In 2010 Dr. Shaoguang Li of the University of Massachusetts applied for a grant through MPN Research Foundation's Established Investigator program. The goal of Dr. Li’s project is to study and confirm that the gene Alox5 plays a role in the development and progression of PV. Alox5 is a promising target, because its presence is essential for the development of a related blood disease, chronic myelogoenous leukemia, and its loss prevents that disease from developing. Dr. Li will study the role of Alox5 in human PV cells, and will test an existing Alox5-inhibiting drug (Zileuton) in mouse models of the disease.

Established MPN Investigators have a proven track record of contributing to the field of MPN research, and for submitting proposals that are judged to have a high probability of success. The MPN Research Foundation seeks to capitalize on solid science by encouraging collaboration and sharing information in order to benefit the MPN community. Dr. Li’s work has the potential to open an entire new avenue of treatment options for PV and possibly other MPNs.

JoAnn Mason, Director, MPN Research Foundation

 

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